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Author
Topic: Back Home (Read 2843 times)

I am back home from the hospital. It was a really, really long week. Thank you so much for all your good thoughts and prayers. Chris printed out your replies and brought them to the hospital. My Mom read them, and started to cry, and said she was glad you were all here so I can have someone to talk to who understands.

I feel okay. The AZT in the Trizivir caused my red and white blood cells to crash, and because of that I became severely dehydrated. I was drinking lots of fluids, but my body was not absorbing them. I had a horrible neck headache, and the Doctor first thought it was meningitis. they did a MRI, and it came back normal, then all the blood work came back normal except the red/white blood cells, and the electrolytes.

So I got fluids and an IV antibiotic since my white counts were almost nothing. And of course with my great luck, I had a reaction to the antibiotic- rash, fever. Then I had a reaction to a pain killer - rigors - uncontrollable shaking of the whole body. Which didn't hurt, it was just weird feeling. A shot of Demerol stopped it.

I got 4 bags of blood without a problem to help bring my hematocrit up, which it did slowly. I think it is at 9.5 now. On bag number 5, allergic reaction again. Rash, fever. I didn't know you can get a reaction to blood.

For the white blood counts, I am taking Neupogen shots. I was at .4 and now it is at 1100.

But, the worst part of all of it was the ID appointment last Thursday. I was admitted though the ID clinic into the hospital after my appointment, but during the appointment the doctor had the talk with me that I knew would come some day, but I just didn't want to hear it.

She asked me where I was at in treatment. We discussed that I am in salvage therapy, and it will come to a day that nothing will work. Which I know. She asked me if I was able to continue the fight, if I wanted to continue the fight.

When I was first diagnosed, I remember thinking that I would fight as long as I could, and would stop when I felt at peace with the forthcoming end.

I don't have that feeling of peace yet. I still have that fight left in me. It's not as strong as it was, but it is still there.

So I told all this to the ID doctor, and went over my living will and durable power of health. My Mom was with me in the room, and I wish she wasn't. That isn't something any parent should have to see and hear.

I have a followup Tuesday, and an appointment in the Infusion room for fluids if needed.

Over all I feel okay, just really tired, and I still have some residual rash on my arms.

Thanks again for being so kind to Chris, and for sending all your well wishes. You may not think a simple post can mean much, but when you're in a hospital bed hooked up to IV's they meant more to me than I can ever tell all of you.

And as for your doctor... wow. You JUST walked out of the hospital after a horrific and depressing experience, and he chooses THAT moment to ask you if you felt like fighting? Hell, ask me that question three times in a given day and I am likely to give three different answers.

Get some sleep in your own bed, surrounded by the people who love you. Sometimes it's not even about the fight. Sometimes its just about that love.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Christine, all I can say is I am glad you are back home and can decompress after all of this "crashing" stuff.. I am a bit sad at your doctors timing and all. Lets hope for a better day and a clearer path...

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

So glad you are back home. Hold on and don't give up because something will come along that will help you. That will help all of us. I admire your bravery. And this is what this website is all about, people like you who are inspiration to all of us.

Chris printed out your replies and brought them to the hospital. My Mom read them, and started to cry, and said she was glad you were all here so I can have someone to talk to who understands.

That's us! Your forum family. Fight HIV and to see what the future holds and we'll fight right by your side, every step of the way. Best wishes for your Tuesday follow-up. Fluids, ahhhhhh Love you! Alex

Hi Everyone,Thanks for the welcome back. I have been sleeping and snuggling on the couch with Chris and the puppies.

The ID doctor had 'the talk' with me before going into the hospital. She wanted to be clear on my wishes if I had become incapacitated while in the hospital. I went over my living will and power of health to make sure she understands my wishes.

I'm glad to hear you are at home Christine. I did a huge fist pump when I saw your topic.

You are a trooper and a huge inspiration. Hang in there. I'll be praying for you.

I trademarked the fist pump about 8 years ago. From now on please do the fist pump with an open hand to avoid any "legal entanglements!"

Glad to have you back Christine! We missed you!

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LIFE is not a race to the grave with the intention of arriving safelyin a pretty and well-preserved body, but, rather to skid in broadside,thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT ARIDE!!!